Headache help

[maitrimama]

Well put Jumpinjiminy, I know all I have to bring here is my experience, encouragement and maybe a funny story.

Redwing - thank for all the detailed info, it helps me process all this info and try to keep it organized in my kooky (add riddled mind). It made me laugh when you mentioned using correct medical terminology, like using the correct names for private parts with my girls when they were little. Despite our best efforts they came up with their own silly names!

My visual problems, what I now know is cranial nerve V5 numbness/burning and headache (8 wks now) are what got me to the Dr. The visual problems are what keep me going. Today is my last test at the Ophthalmologist. Then I go to my 2nd Neurologist and then he is sending me to a Neuro-Ophthalmologist at Yale/New Haven.

After buying 3 different pair of reading glasses I had that gut feeling that my problems weren't refractive. So far I have found out that:
- My distance vision, though pretty bad, hasn't changed
- With glasses on my left eye does not focus
- Without glasses left eye barely focus
- Color vision has been dimished in the blue range
- Contrast sensivity has definitely been dimished
- Depth perception has been diminished
- Night vision is getting worse
- Lights at night all look like big starbursts
- Even a little glare makes it hard for me to see
- Loss of some vision lower left field of vision
- Enlarged blind spot in both eyes
- Eye pressure a little elevated (glaucoma) but Dr feels that is not enough to cause all the above.
- When I do try to read the lines of print move up and down ever so slight

I am resigned to the fact that the damage down can probably not reversed and I am hoping we can keep it from getting worse.

[kingrex]

Have you checked your blood pressure recently? I was having really bad headaches for a couple of days and it was because my B/P was 174/92! I had run out of one of my B/P meds and had forgotten to refill it.

Many years ago people generally associated headaches with elevated BP, but modern medicine largely downplays this presumed connection. In fact, some studies indicate that people with HBP actually expeience fewer headaches.
A study of HBP patients indicated that nearly 75% of those who knew that they had HBP suffered from headaches, while only a fraction of those who were unaware of their HBP were afflicted with headaches. So, there may be a psychological component to it.

Also, some HBP medications are known to cause headaches - I experienced this myself after my heart surgery.


rex

[Redwings]

barelracer, thou doth protest too much. If you’ll reread my post, you’ll see that it doesn’t say anything about you or about your experience. If you’ll reread your own post, you’ll see that it also says very little about your experience. Most of it is statements of fact, which turn out to be misstatements of fact, which I commented on. That's what happens in a public forum. The exchange was no different than someone saying, “DMDs cure MS” and someone else posting to say, “No they don’t, and here’s why.” I’m as entitled to post my thoughts as you are to post yours. It's completely unrealistic of you to think otherwise.

I didn’t say anything about you, and no “smackdown” occurred or was even implied. Your perception and reaction exist only in your own mind. But since you brought it up…

If there’s anything I’m going to smack down, it’s your assertion that you can post what you want to, but anyone who says something you don’t agree with – or misinterpret – isn’t allowed to. I’ll smack down your assertion that you were “only trying to help” but that I wasn’t or am not allowed to “help.” I’ll smack down that your good intentions give you some kind of protected status that allows you to make misstatements that can mislead other people, and that no one else is allowed to comment.

I’ll smack down how you took a post that has absolutely nothing to do with you and made it all about you. I’ll smack down whatever happened to you that the realization that you made a simple misstatement embarrasses you to the point that you believe you’re being attacked. I’ll smack down whatever made you think that someone else is responsible for your feelings and that you’re entitled to lash out at someone who hasn’t hurt you in any way. I’ll smack down whatever made you think that you’re the only person posting here who has feelings.

You made misstatements of fact. That’s not worth beating yourself up over, and not something you’re entitled to beat me up over. It’s worth an “Oops, live and learn,” not a Shakespearean tragedy.

[Redwings]

jumpinjiminy, an OCT of your RNFLs/nerve heads might be worthwhile. Your case is so weird and puzzling that any new clues can give some direction about where to look, or where to stop looking. Have you already seen a retinal specialist or neuro-ophthalmologist? Those specialists often have an OCT in-office. A lot of neurologists still don't know what to make of OCT information, so you might need to do some of your own research -- and rely on the ophthalmologist -- to help your neuro know what to make of abnormal results.

maitrimama, your symptoms are pretty typical of optic nerve damage, particularly the problem with glare. One of the things I really hate about winter is that the sun has a lower angle in the sky, and it doesn't ever seem to be in a position high enough that isn't right in my eyes, causing more glare. Have you noticed that yet?

One of the things that I find interesting about your case is that your color deficit is in the blue range. Optic nerve damage typically causes problems with red perception. With optical glare, it's the short-wavelength light -- blue light -- that scatters and causes glare. But the glare that comes from optic nerve and brain damage isn't optical glare, so blue light scatter isn't automatically a factor, although it can be.

One of the first things I tried after my really bad case of ON was blue-blocker lenses. Sometimes they help "neurological" glare. But in my case they did the opposite. I tried everything from amber to red. Apparently, the lenses filtered out blue light that I was actually using to see with, and my vision got worse with them. If the glare were optical, my vision should have gotten better. Many people with "neurological" glare find that their vision sharpens with blue-light filtering lenses. They just didn't work for me.

Even in normal eyes, filtering out blue light can help to improve contrast.

The fact that your color deficit is in the blue range may say something about the kind of glare you're experiencing. It will be interesting to see what the neuro-ophth has to say about your vision. It might also be interesting to see how your vision responds to blue-blocker lenses. If you're lucky, you might find that they cut the glare and that your vision improves with them. If not, at least you'll know you tried.

[jumpinjiminy]

Funny thing, I don't think the neuro-ophth I saw had that test. She never suggested it, maybe because she thinks my problem is farther back in the chain. I'm supposed to be scheduling with her this month for a follow up and have been dragging my feet on it.

When I was looking for another new neurologist, someone suggested a woman at a major research hospital. I looked her up and her interests lie in brain atrophy, silent disease, and this OCD test and research, which is the first time I ever heard of it. My GP put in a referral to her, but the neuro wanted me to steer away from anyone with an MS focus and go with a more general neuro.

I'm still on the fence and not making any moves there. And I, too, have trouble with glare and have had since my early to mid-30s with the first referral to an ophth for color vision problems. It keeps me from doing jigsaw puzzles, a favorite pastime, because the glare on the pieces interferes too much. It's really bad at night in the rain, especially when I'm going through a phase that affects my night vision. I had no idea there was something like neurological glare.

I'd be interested in hearing your thoughts on not being able to see in a dark room - like a photo developing room - with only the red light. Could that be considered a loss of red color vision? Or is it something else?

I might try your suggestion on the blue filtering lenses. Glare is not one of my most favorite 'old age' problems. Lol.

[Thinkimjob]

Just to frighten you - I had a series of what I thought were migraines; out of the blue, never had them before etc, and then, drum roll please, some months later I had a subarachnoid cerebral haemmorhage.
Turned out the migraines may have been tiny, tiny little bleeds before the big one.
Go to a doctor. At the very least, you'll get some decent pain relief.
Lignocaine is your friend.

[jumpinjiminy]

Just to frighten you - I had a series of what I thought were migraines; out of the blue, never had them before etc, and then, drum roll please, some months later I had a subarachnoid cerebral haemmorhage.
Turned out the migraines may have been tiny, tiny little bleeds before the big one.
Go to a doctor. At the very least, you'll get some decent pain relief.
Lignocaine is your friend.

Scary, but this made me laugh. It made me remember the time I saw my GP for a yearly physical and told him I'd had a 3-month headache several months prior. He did a neuro exam, asked me questions about my eyes and I told him they blur from time to time. The first thing he wanted to do was send me for a CT scan. I declined. I told him if my headaches were a sign of brain cancer, I'd be dead by now. I was too young for strokes, and not many risk factors either, and thought the blurred vision just meant I had a little eye strain.

One year later, it all broke loose. . . lol. Maybe I should have done that CT scan after all?

[Shashi]

Many years ago people generally associated headaches with elevated BP, but modern medicine largely downplays this presumed connection. In fact, some studies indicate that people with HBP actually expeience fewer headaches.
A study of HBP patients indicated that nearly 75% of those who knew that they had HBP suffered from headaches, while only a fraction of those who were unaware of their HBP were afflicted with headaches. So, there may be a psychological component to it.

Also, some HBP medications are known to cause headaches - I experienced this myself after my heart surgery.


rex

Might be true, but all I know is that my head felt like it was about to blow off for several days until I realized I'd forgotten to refill my meds. Once I started back to taking all three of them, the headache ended. Usually any time I get a headache, I'll check and my B/P is up. Could be a coincidence, I guess, but there does seem to be a connection, at least for me.

[jumpinjiminy]

Shashi, my mom had bad headaches from time to time. She also had low BP. She eventually did end up with high BP, and when she went on beta blockers, she never got another headache.

One of my neuros prescribed calcium channel blockers for my migraines. He thinks they're complex migraines. The Ca blockers gave me a headache. They also had a side effect that was very unwelcome during that time and I had to stop taking them.

Baclofen seems to be the best preventive for my headaches. I only get the pain when my neck and shoulders are full of tension. If one comes on, I hit it with Advil, baclofen, and a nap. Sometimes it takes a few days to completely kick it, but this keeps it at a background noise level rather than a full orchestra with front row seating.

[barelracer]

Opps, sorry..

sorry, guess i hit a nerve, or bundle of nirves..
*sigh* didnt mean to cause dramma...

guess i dont deal with this stpid disease as well as some.

[sloth]

Hi Heather: you asked: "Someone suggested that the methylprednisolone can worsen your vision over time, I'm wondering if there is anything in this? "

Prednisone in all forms can cause cataracts at any age.
Ive been using low dose prednisone and prednisolone or whatever it is, for many years now for systemic allergic reaction and ms and after ten yrs of it I now have cataracts.

Im too young for them normally. My specialists said yes the pred does this.